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"They imposed this big self-advocacy thing on us last year," she says of the district. "They wanted it to be one of my daughter's goals. But the way I interpreted it was that it was a way to get parents out of the way."
Gerri Masson, a learning specialist with a private diagnostic clinic for special-needs kids, also helps children understand and express their disabilities, but she doesn't call it self-advocacy; rather, she says, she takes a team approach in which she also works with kids' parents and teachers. "Self-advocacy is a relatively new phenomenon. There's a lot of emphasis now on kids empowering themselves, but it's really hard for a kid to be his own advocate when the person he's advocating to doesn't have a clue. Where it's misused is when all of the impetus is placed on the child," she says. "There really needs to be a partnership between educators, kids and families."
Fleury understands the reservations people have with self-advocacy, and she realizes that in order for her program to work, parents have to encourage their kids and schools need to be open to the idea of hearing directly from students. And she agrees that it's not enough to just write self-advocacy into a child's IEP. "Sometimes teachers will just leave it up to the kid to take the initiative, but what's really going to start the process is to make the child understand his learning disability and come up with strategies," she says. "Teachers really need to get on board with this."
When Fleury sits down with students, she starts by assessing their level of understanding about their situation. "Some kids don't even recognize that they have a disability," she says. With those kids, Fleury has to start from scratch, explaining to them in simple terms why they learn differently from their classmates.
For kids who already have a basic understanding of their disability and how it impacts their schoolwork, Fleury uses role-playing techniques. Pretending to be the teacher, she'll go through a series of scenarios that the student might encounter. For example, with a student who has trouble writing or concentrating, she might pretend that it's the middle of English class and the child can't keep up as the teacher is writing notes on the chalkboard. Fleury will encourage the student to practice raising his hand in the mock class and asking her, as the teacher, to slow down or repeat what she just said. Fleury also teaches kids to talk to their teachers privately so that they'll understand why the student might ask for certain accommodations during class.
"Most of the time, those things are in their IEPs," she says, explaining that when students talk to their teachers about what they need, it reinforces what the teachers already have on paper.
Because Fleury has worked with only a few students so far -- including Chris Todd -- the results aren't fully known, but the progress she's already seen in one boy has inspired her. "The last boy I worked with has some social anxiety. He has trouble talking to people in authority," she explains. "I talked to him about his disability and what it means in school, and his one comment to me was, 'All I need is more one-on-one help.' It was so simple. During his IEP meeting, he was actually able to talk about the things we'd talked about. His mom couldn't believe he'd talked like that in a meeting and that the people on his IEP team took him seriously."
Fleury hopes that the boy and other kids will eventually feel as comfortable advocating for themselves as the L.E.A.D. students and her own son, Matt, who noticed that something was wrong when he was in kindergarten.
"He came home and told me he thought he was stupid because his brain worked differently than other people's," Fleury recalls.
"I didn't know how to write words, and other people did," explains Matt, who is now in sixth grade.
"A lot of kids know what they need; they're just too afraid to verbalize it," says Fleury. "If we teach them about their IEPs, they'll understand why they're there, and they can help write their own goals and objectives. We take so much of the process away from the kids. We think we know everything because we're the experts, but we never ask the kids what they need."
Fleury had Matt screened for a learning disability in first grade; the test showed he was borderline for attention deficit disorder. "His teacher disagreed with me and said he didn't have ADD because he was so focused," she recalls.
Things got worse for Matt in fourth grade. "I started to realize something was going on, because I kept spacing out all the time and it took me a long time to finish my work. I knew I wasn't doing the best quality work I could do," he says.
When he told his mom that, she had him tested again, and this time, the results were conclusive: He did have ADD. They also learned that he has obsessive-compulsive disorder, which explains why he manages to get good grades and can refocus after brief episodes of spacing out; the OCD, Fleury says, sometimes masks his ADD.